Has anyone felt they've hit rock bottom in their Lyme treatment only to find out it may be protracted withdrawal from years of using psych meds?
Thanks 💚
Posted by terv (Member # 29410) on :
I don't know if you consider these psych meds but I take/took ativan, klonipin, and seroquel for sleep for years. Along with lamictal and lyrica.
If I forgot to take them it was beyond awful. I felt like I had a fever/chills and I cant even remember what else. I did think my lyme had come back with a vengeance. It was so bad. Then at night I would look at my med container and see that I hadn't taken them.
Over the years this happened a few times. Finally at the last time I realized what was going on and took an ativan. Really helped.
I decided to get off of them. I started to think about my sleep issues and thought that the drugs could be contributing. They would wear off and I would wake up.
I have been slowly titrating them down. I am completely off ativan and just about seroquel. My sleep has improved somewhat but most importantly I haven't gone backward so I dont need them.
Posted by Mountainsky (Member # 51857) on :
It's not just sleep.
I have horrific anxiety, OCD, worry, at other times bouts of depression. It feels like bipolar.
Headaches, body pain, extreme debilitating fatigue at times, memory loss.
Serequal I took back in the day, not Klonopin. Ativan yes. And maybe 20 of so other anxiety/depression meds, antipsychotics in the last 20 years.
Posted by map1131 (Member # 2022) on :
Mountainsky, have you had a doc take a deep look at your thyroid. Lyme & co is well known to attack and mess with thyroid hormones?
Your symptoms and the feeling of bipolar really makes me think you very well could be one of those folks.
The Thyroid disease world is as hard to figure out as the Lyme world. Sadly the doctoring situation is just as bad also
It wasn't until 4+ years ago that I got my answers about the thyroid world (after 30 yrs) and it turned my Lyme & co (20+ yrs) world completely around.
Pam
Posted by Mountainsky (Member # 51857) on :
Hi Pam,
I went to an Endocrinologist a month ago, lovely doctor ( wish she could be my PCP) As a "mainstream doc" I was quite impressed.
No thyroid/adrenal issues she's not the first Endocrinologist I've seen too. I have insulin resistance and PCOS.
Posted by terv (Member # 29410) on :
Were you on psych meds that you stopped?
Posted by Mountainsky (Member # 51857) on :
Yup, I stopped many times, never cold turkey though.
Posted by Lymetoo (Member # 743) on :
Cold turkey would be difficult.
Did your endo check anything more than the TSH? They are notorious for only doing the TSH.
Posted by Mountainsky (Member # 51857) on :
T3, T4, and a few others (cannot remember the names) all NORMAL. Yes a TSH alone means nada lol like a negative ELISA Lyme result.
Since the age of 14 I've had so many thyroid tests, nothing ever flagged.
Posted by Lymetoo (Member # 743) on :
Good.
Posted by LSG Scott (Member # 21624) on :
well you might find this link interesting check in out, talks all about it!
"antidepressants do not differ from other dependence-forming central nervous system (CNS) drugs like benzodiazepines"
Posted by Mountainsky (Member # 51857) on :
Absolutely, benzos aren't the only ones to cause PAWS I know. I wasn't just on benzos either.
Thank you for that article, sadly damage was already done. Just makes me more angrier because I can't change anything. You'd think the article would give me hope and reaffirmation that it's not *me* it's the PAWS, but it doesn't.
Like Lyme treatment, have to just wait and see improvement which there hasn't been.
Everyday is groundhog day.
Posted by LSG Scott (Member # 21624) on :
Some are finding success with L-Theanine.
L-Theanine works by blocking the activation of Glutamate receptors. This helps to slow neural activity back down without causing further downregulation to the GABA receptor sites that Benzodiazepines bind to.
L-Theanine also elevates Dopamine and Serotonin levels. The increase in Serotonin levels will be making you feel less depressed and the increase in Dopamine levels may be a contributing factor to your sleeping difficulties. So try using L-Theanine as early in the day as possible. and I would add 1000mg of Taurine at bed time to help get those GABA receptors working proper again good luck!
Posted by terv (Member # 29410) on :
Great article Lymetoo!
Posted by LSG Scott (Member # 21624) on :
and this talks about how Taurine helps the brain GABA too, should be good for healing and settling down the W/D symptoms
Thank you again LSG Scott
Posted by map1131 (Member # 2022) on :
Mountainsky, seeing an Endo (90% of the time) is like seeing a GP for Chronic Lyme.
Thyroid lab ranges used are from a healthy control group. Healthy is not a word I would use to describe Lyme & co folks.
So, you've been having thyroid labs since you were 14? That tells me there must have been suspicion, family history, something?
Pam
Posted by Mountainsky (Member # 51857) on :
Pam, yes we have thyroid issues on both sides of the family. I understand blood tests mean nothing of course.
I am just extremely overwhelmed with all this.
Posted by map1131 (Member # 2022) on :
Mountainsky, believe me I completely understand the overwhelmed. I also have thyroid family history, in fact genetically......
I was a mess health wise starting in my teens from thyroid also. No wonder, when the tick bites got me 22 yrs ago, it was the straw that broke my back.
I was a disaster waiting to happen. Don't feel hopeless. You can get to a better place.
Pam
Posted by D Bergy (Member # 9984) on :
By coincidence, I have been helping a person, mostly in a supportive capacity, who has been going through protracted withdrawal from psych meds who originally thought she had lyme disease.
The symptoms are similar in some respects but they are more different than the same.
Protracted withdrawal can be a horrible journey, however the people that have already gone through it say everyone recovers from it.
The really difficult part about it is there doesn’t seem to be any good method of reducing the symptoms.
While detoxing the last of the drugs stuck in the fatty tissues probably will shorten its duration, the same seems to increase symptoms.
If we come across something that helps, I will let you know.
There are support groups out there for this. I don’t know the names off hand but they exist.
The person I talk to has the following symptoms:
Bad burning sensation in the body and worse in the head. Vibrations in the body. Gets jerked awake when trying to sleep. Didn’t sleep at all for first couple of years. A form of tinnitus in which she hears water running and a sound like a motor running. High anxiety. Feelings of impending doom. Often feeling something else is causing symptoms although in good physical health and no indications that it actually is something else. Symptoms are so intense she cannot function or do much of anything. Although she does get occasional windows when symptoms are less and she is able to do things.
I am real familiar with lyme and its symptoms. Hers do not give me any reason to suspect lyme or coinfections.
The good news is you should fully recover. The bad news is it can take a long time.
Dan
Posted by Mountainsky (Member # 51857) on :
I learned to accept I might not ever get well. Might not be able or want to start a family ( even considered permanent b/c)
The only thing that keeps me going is my job and that's getting hard to do now.
It's always been 1 step forward 2 steps back. People say I'm just in a " funk" but it's been like this for a very long time for it to be a funk.
I have my 1st therapy appt next week and I might just cancel. She's gonna tell me things I already have heard.
Posted by Lymetoo (Member # 743) on :
Keep that appointment, mountainsky! That IS your hope!
Posted by Mountainsky (Member # 51857) on :
It's just one more thing for someone to use against me as a woman.
"she sees a therapist therefore she's a weakling"
I rather not see that hope and not give myself that chance and to be chastised and laughed at.
Just a waste of time. A therapist can't fix it anyway.
Posted by map1131 (Member # 2022) on :
Mountainsky, you need to talk to a therapist to help you MOVE on mentally. If this is a therapist that works with chronically ill people, it will be the best time/money spent.
Living in your head that nothing is going to help you get better is not the place for you to be.
Majority of us have been down that rabbit hole. When you find the right doctors to help you, you will find the other side.
I ran across and was reading some more of your posts of late this morning and I truly believe that taking your eyes, mind off killing Lyme & co for 3-6 months would help you.
I suggest you find a local compound pharmacy and talk to the pharmacist about needing a doctor that rx's the correct thyroid hormones, female hormones, vitamin/minerals deficiency would do wonders for you.
If I could turn back time, I believe my journey would have been so much better if only I knew how broken other things were in my body besides Lyme & co.
Pam
Posted by Lymetoo (Member # 743) on :
True, Pam. Lyme affects so many parts of our bodies. It's not all Lyme.
I was helped with counseling when I was forced to retire from teaching many years ago. It helped me cope with that loss and gave me the ability to move on.